Managing everyday life: Self-management strategies people use to live well with neurological conditions

Åsa Audulv,Susan Hutchinson,Grace Warner,George Kephart,Joan Versnel,Tanya L Packer

doi:10.1016/j.pec.2020.07.025

Åsa Audulv, Susan Hutchinson + Show 4 more

Open Access

https://doi.org/10.1016/j.pec.2020.07.025

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Abstract

ObjectiveThis paper uses the Taxonomy of Everyday Self-management Strategies (TEDSS) to provide insight and understanding into the complex and interdependent self-management strategies people with neurological conditions use to manage everyday life. MethodsAs part of a national Canadian study, structured telephone interviews were conducted monthly for eleven months, with 117 people living with one or more neurological conditions. Answers to five open-ended questions were analyzed using qualitative content analysis. A total of 7236 statements were analyzed. ResultsFindings are presented in two overarching patterns: 1) self-management pervades all aspects of life, and 2) self-management is a chain of decisions and behaviours. Participants emphasized management of daily activities and social relationships as important to maintaining meaning in their lives. ConclusionManaging everyday life with a neurological condition includes a wide range of diverse strategies that often interact and complement each other. Some people need to intentionally manage every aspect of everyday life. Practice implicationsFor people living with neurological conditions, there is a need for health providers and systems to go beyond standard advice for self-management. Self-management support is best tailored to each individual, their life context and the realities of their illness trajectory.

Highlights

Living with neurological conditions often includes experiencing difficult physical symptoms, cognitive problems, physical disability, and/or emotional and social consequences [1]
Extent and diversity of self-management strategies people with neurological conditions use to manage their everyday lives is critical to high quality chronic disease management services
While many self-management support programs for people with neurological conditions focus on prevention of complications and/or symptom control participants in this study reported many and varied strategies beyond medical management

Summary

Introduction

Living with neurological conditions often includes experiencing difficult physical symptoms (i.e. fatigue and/or pain), cognitive problems (i.e. poor concentration, executive function or shortterm memory loss), physical disability, and/or emotional and social consequences [1]. Adaptation and self-management are often required to control and manage the everyday life consequences of these conditions [2,3]. Evidence shows that peoples’ everyday management of their condition and its consequences has a profound impact on their current and future health and well-. Extent and diversity of self-management strategies people with neurological conditions use to manage their everyday lives is critical to high quality chronic disease management services. Research describing what people do to manage their neurological condition(s) on a daily basis is limited. To offer relevant and successful suggestions and ideas to patients, health providers need to understand the complexity, challenges and self-management strategies needed to self-manage every day with a neurological condition

Methods

Results

Discussion

Conclusion